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Childrens Autism Pathway
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Pathway Overview
Suspected ASD
Initial screen
Referral for ASD diagnostic workup
ASD diagnosis confirmed
Intervention Package Stepped care model
Discharge
Info for Referrers: Core features Other features Mental health problems Presentation in Primary Care Info for Carers/Patients Useful contacts
Screening Referral Criteria
Standard Diagnostic Workup Outcomes References
Needs Based Assessment
Refe
rra
l to
Asse
ssm
ent
– 1
3 w
ee
ks
Asse
ssm
en
t to
Dia
gn
osis
– 1
2 m
on
ths
Sta
nd
ard
s/ P
rofe
ssio
na
l skills
/ Tra
inin
g re
qu
ired
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Background
Autism is an umbrella term for a group of complex neuro-developmental conditions,
characterised by qualitative abnormalities in reciprocal social interaction, social
communication, imaginative activity, and a restricted, repetitive repertoire of interests
and activities. These characteristics are known as the triad of impairments (Wing
(1979)). Autism Spectrum Disorders (ASD) and are found throughout the whole IQ
range, from profound intellectual disability right up to superior levels of intellectual
functioning. Presentation will vary in line with intellectual level, however the core
features described above will be present in all cases.
Table 1 below provides an overview of the presentation of ASD across the IQ range.
Table 1
Feature of ASD IQ Range
Severe/Profound ID Normal/Superior IQ
Social Impairment Aloof Passive Active but odd Overformal, stilted
Communication Mutism/ Echolalia Difficulties with humour/
prosody
Behaviour Simple stereotypies Complex rituals
Sensory Problems Hyposensitivity Hypersensitivity
Currently three major clinical subgroups are recognized: Childhood/Classical Autism,
High Functioning Autism (HFA), and Asperger Syndrome (AS). AS and HFA are
now thought to account for most cases in the population. In the general population
Autism is much commoner in males; however this sex difference decreases with
increasing levels of LD. It affects all age groups equally, affecting approximately 1%
of the population.
Some service users, carers and professionals may dislike the terms ‘disorder’ and
‘impairment’ and prefer the general term ‘Autism Spectrum Conditions’, taking the
viewpoint that having Autism is being different, not abnormal. We fully respect these
viewpoints; however, for the sake of consistency in this document, the generally
used medical terms will be retained.
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Core impairments
Social interaction difficulties
This refers to an impaired ability to engage in reciprocal social interactions. A
minority of individuals seem aloof and uninterested in people. Some passively accept
the attentions of others but do not reciprocate, lacking the ability and/or desire to do
so. Others may desire contact, but fail to understand the reciprocal nature of normal
social interaction. In consequence their attempts at social interaction may be clumsy,
awkward and one-sided. The most able individuals and those who have received
training and support because of early recognition may have learnt some ‘social
norms’ but still struggle to apply them appropriately, fearing making errors, and thus
coming across as overcorrect and stilted in their interactions.
Social communication problems
The whole range of communicative skills may be affected. A significant proportion of
individuals with infantile autism fail to develop useful speech. Even when the
mechanics of language are mastered, a child with autism has difficulty using it for the
purpose of communicating with others. Intonation is inclined to be abnormal and the
non-verbal aspects of communication such as eye-to-eye gaze, use of gesture and
facial expression can be impaired although training may also help reduce this.
Imagination impairment
Children with autism have great difficulty thinking imaginatively. This is demonstrated
in childhood by difficulties in pretend play, which will be absent or repetitive in
children with autism spectrum disorders. Whether this is directly related to the
development of rigid and repetitive behaviours has not been established. In later
years this can be seen in difficulties with areas such as understanding implied
meanings in what other people say, taking account of other people’s feelings,
engaging in social chit-chat, and ability to predict the possible outcomes of a
situation
Impairment of emotions
Children with autism have great difficulty in recognising and expressing their own
emotions and those of others. This is demonstrated in an inability to describe
happiness, enjoyment, jealousy and even depression and anxiety and in the
sometimes complete lack of altered facial expression, gesture, altered vocal
intonation. Subtle nonverbal signs of emotions expressed by others will be
completely missed and more obvious expressions in a carer such as anger or
tearfulness may be ignored or may produce negative and seemingly callous
reactions. More able individuals with ASD may develop intellectual empathy and
understanding that is psychologically, whilst still not being able to register emotional
empathy in a natural automatic way.
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Other key characteristics of ASD
Psychological research indicates that there are underlying deficits in a number of
areas of cognitive functioning in all forms of autism. Problems with communication
and behaviour may be partly explained by these cognitive difficulties. Thus a child
who on record has a good academic achievement may have no friends or just one
real friend, appear to struggle and be unexpectedly slow in communication and in
adapting flexibly to the norms of everyday life.
Adherence to routines
People with an ASD may have rules and rituals (ways of doing things) which they
insist upon. They may prefer to order their day to a set pattern and any unexpected
change in routine can cause them anxiety or upset. These may appear to be, but are
actually not, obsessions.
Repetitive and stereotyped behaviours
Another important characteristic is repetitive and stereotyped behaviours. This will
manifest in differing ways according to the individual’s intellectual ability level.
Examples of simple activities, more often seen in childhood or in those with
significant intellectual disability, include lining up objects, spinning objects or flapping
hands. More complex behaviours include repetitive rituals involving set patterns of
words/actions which have to be carried out without interruption by the person and/or
others. Collecting for no meaningful or social purpose (i.e. hoarding) is sometimes a
significant focus of attention. At the simple level this may involve collecting items
such as coloured pieces of plastic, through to collecting facts about a particular topic
(see below). Even those with normal or above average general ability will often find
changes in routine difficult and will be at more ease with detailed and even quite
complex routine activities such as IT-related processes.
Special interests
People with an ASD may develop intense, often obsessive interests. Occasionally
these interests are lifelong; in other cases, one interest is replaced by an
unconnected interest. For example, a person may focus on learning all there is to
know about trains or computers. Some are exceptionally knowledgeable in their
chosen field of interest. With encouragement, interests and skills can be developed
in some individuals to enable them to study or work in their favourite subjects.
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Mental health issues
Evidence from clinical populations shows that mental health difficulties are common
among people with an ASD. Attention Deficit Hyperactivity Disorder can be
diagnosed in approximately a quarter of children with ASD and there are higher
levels of anxiety and depression than in other children. The presentation of
depression and anxiety can differ to that in the general population and clinicians
need to be aware that they can as a cause for any change in behaviour or
functioning. These co-morbid presentations can be easily missed and the behaviours
attributed to the ASD itself. Repetitive and routine-bound behaviours may be
attempts to reduce anxiety levels, while challenging behaviours e.g. aggression and
self-injury may be a response to increased anxiety levels. Although not necessarily a
mental health problem, sleep difficulties are very common.
Diagnosis of psychotic illness can present particular challenges, needing to be
differentiated from the eccentric beliefs and vivid fantasy life which may form part of
a person’s ASD. Misdiagnosis of ASD as a psychotic disorder can occur, leading to
long-term treatment with antipsychotic medication with limited benefit and the
potential for significant side effects.
Presentation in Primary Care
Given the diverse presentation of ASD, recognition can be particularly challenging at
primary care level where consultation time is limited and core impairments may not
feature among the issues presenting for consultation. In this situation, a number of
useful trigger points (Soft signs) have been identified which should alert
professionals to a diagnosis of possible ASD. These are listed below;
1. Delayed development of speech
2. Poor development of imaginary play
3. Difficulties with social skills (starting school)
4. Poor non-verbal communication (eye contact or gestures)
5. Picky eating/unusual routines around food
6. Difficulties occurring repeatedly around holidays (change in routine).
7. Relationship difficulties (making friends or relationships in the family)
8. Difficulties around transition times (change of school)
9. May present with mental health difficulties
10. Extremely stubborn (Often due to misinterpretations)
11. Extremes of behaviour: out of proportion to the antecedents
12. Sensitive to sounds/smell/touch and other sensory inputs
13. May present with physical health problems (commonly headaches/abdominal
pain)
Screening Go back to Pathway
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Screening
If there are initial concerns about communication /social interaction.
Health Practitioners in consultation with parents/carers should consider either a
Single Point of Access (SPA) referral to Children’s Community Health Service
(CCHS) or Child and Adolescent Mental Health Services (CAMHS), unless the child
is already known to them. This is to explore other possible explanations for the
child’s presentation.
Education Practitioners should in partnership with parents/carers, consult with
appropriate supporting professionals in line with the SEN Code of Practice to seek to
meet the child’s needs. If an Autism Spectrum Disorder is suspected then a referral
should be made to CCHS or CAMHS (see Stage 2 below). If a referral to CAMHS is
felt appropriate then either the GP or an educational psychologist would need to be
involved to make the referral.
Following referral a professional who will be the coordinator for the child’s
assessment should be identified from the professionals involved with the family and
child. The coordinator should be someone who is working closely with the family and
can be self-appointed (with the family’s consent). Once the coordinator is identified
then the other professionals and parents/carers should be informed (preferably in
writing) by the coordinator.
The coordinator should support the family in involving the child or young person in
the process.
Referral Criteria
Due to the current configuration referrals need to be made to an appropriate service
according to the characteristics of the child.
Children with difficulties with social communication/ social interaction should be seen
by either CCHS or CAMHS to consider and exclude any additional health needs or
other diagnosis.
Indicators for which service to refer to are outlined below:
a. Referrals to CCHS should be considered if i. The child is at pre-school or primary level education AND/OR
ii. There are any concerns about a child’s development (any age) AND/OR
iii. There are concurrent medical issues such as possible seizures or regression
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b. Referrals to CAMHS should be considered if i. The child is of secondary or high school age AND/OR ii. There are suspected associated mental health problems (any age) such
as Obsessive Compulsive Disorder, Tourette’s, mood disorders, severe anxiety or possible Psychosis AND/OR
iii. The child is ‘post adoption’ or currently being ‘Looked After’ (as attachment difficulties can present in a similar way) – any age
c. Referrals to CAMHS LD if the child has a co-existing moderate to severe learning disorder and for younger children it has been difficult to clarify the ASD diagnosis in CCHS.
d. When a referral is received by a service (for example received by CAMHS) is felt to be inappropriate for that service, then the following options are available: i. If the letter clearly indicates that the referral should have gone to the other
service, then the referral letter should be sent across to the other service with a standard note sent to the referrer to let them know.
ii. If after assessment by one service it is felt that there are concerns suggesting that the other service should be involved, then a referral letter should be sent to the SPA for the other service.
If Speech and language therapy are not involved with a child, then referral to Speech and language therapy should be considered in accordance with SALT referral guidelines.
Standard Diagnostic Workup
Initial Assessment
A full diagnostic workup may take several hours and may be completed by the
clinician who is involved in the initial assessment or may involve further clinicians
(see below) depending on the experience and competence of the initial clinician in
the diagnosis of ASD. There may be some minor differences between processing of
the referrals sent to different parts of the service but the overall principles should be
the same.
The diagnostic process will commence with a clinical interview with the child and
their family / carers as appropriate. The aim of this process will be to establish the
nature of the individual’s difficulties and whether an ASD is a likely diagnosis. The
use of checklists and quick screening instruments may be used to assist the clinician
in establishing whether an ASD or significant traits are present and warrant further
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detailed assessment. The tool chosen will depend upon the clinical presentation of
the individual coming for assessment, including their general ability and
communication level.
In some cases the diagnosis will be fairly straightforward to establish using clinical
interviews with the individual and family members / carers, along with clinical
observation. Reports of the child’s behaviour in their usual environments from other
professional groups should be sought at this time.
Clinical observations are ideally carried out in the individual’s usual environments but
this is not always practical, and the use of structured observation assessment
schedules, for example the appropriate ADOS module (according to the Child’s
communication level) can be undertaken in the clinic setting which can aid diagnosis.
If felt appropriate a multi-agency meeting can be held at this time to share
information and to agree the diagnosis. This meeting will be explained in the next
sections.
In some cases the ADOS will be completed before the multi-agency meeting and
sometimes following this depending on the clinical situation.
If the diagnosis remains unclear at this point and the initial clinician requires further
assessment of the child then the case may be transferred to a clinician with a special
interest in ASD. This individual will have a higher level of skill for making the
diagnosis.
This should be in the individuals own service however if another part of the service is
felt more appropriate i.e. due to complicating factors such as mental health problems
then the referral may be transferred.
Assessment by a clinician with a special interest in ASD
This clinician will review the previous assessments and any reports obtained from
other professionals involved with child. They will then make a further clinical
interview/s of the child and family taking a full developmental history and obtaining
any supporting evidence which will confirm or refute the diagnosis.
The clinician should consult all other agencies involved with the child, with parental
permission, as part of the assessment process and the professionals have a duty to
respond to requests for such consultations in a timely manner.
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The information gathered should include observations in, and/or information from,
different settings and should also include information on strengths and interests.
The observations in setting such as schools can be performed by the clinician
themselves or by other personnel trained to perform this function.
Depending on the assessment at this point a multi-agency meeting may be
requested or further investigations sought for example ADOS, sensory assessment
or psychometric assessments (if available within the clinician’s team)
Multiagency liaison including all professionals and parents/carers (unless it is felt
inappropriate for parents/carers to attend or they decline) should be held wherever
possible to share information, reach a conclusion and to identify roles and actions to
be taken. If a multiagency meeting is held it should be arranged by the coordinator
for the child. The diagnosis should be made by a minimum 2 professionals who are
able to make a diagnosis from 2 different agencies. Currently the professionals able
to make a diagnosis are clinical psychologist, educational psychologist,
paediatrician, child and adolescent psychiatrist or specialist speech and language
therapist. Where possible the coordinator should be present at the meeting. The
coordinator should also seek information from all the professionals involved who are
unable to attend the meeting and where appropriate the child/young person.
In the event that a multiagency meeting cannot be held within a reasonable time
frame, then
the clinician should liaise with the other professionals to let them know who is
involved and so enable the full gathering of information from all the different
agencies involved (via reports or telephone). When professionals supply information
via reports or telephone (rather than via a meeting), it is essential that the
professionals view of whether there are difficulties (or not) with the child’s social and
communication skills, should be clearly indicated. The clinician should inform the
other professionals involved if there is any difference of opinion when they collate the
information.
If the diagnosis is made at this point the meeting or liaison will help to identify the
roles and actions to be undertaken across the agencies involved with the child.
If the diagnosis is not felt to be ASD the child and family will be explained the
reasons for this conclusion in a face-to-face meeting and signposted to the
appropriate service.
If the diagnosis remains unclear then further assessment is required this will need a
referral to the Complex Care Forum if the case is within the Community Child Health
Services or the generic (non LD) CAMHS teams.
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Complex Care Forum
In complex cases where diagnosis is unclear, is in dispute, or where significant risk
issues are evident, a more in-depth diagnostic workup is indicated. This forum
composes of clinicians from both CCHS and CAMHS who can review the case and
suggest additional interventions.
In such circumstances, a ‘gold standard’ diagnostic tool e.g. DISCO may be
indicated, complemented by a rigorous observation schedule such as the
appropriate ADOS module. Additional assessment such as a psychometric
assessment or sensory processing assessment may also be requested. In such
cases it is preferable that at least two different disciplines are involved (Psychology,
Psychiatry, Speech and Language Therapy, Nursing, Occupational therapy), to
provide a holistic assessment and to inform each other’s diagnostic thinking and
judgement.
OUTCOMES
ASD IDENTIFIED
Following the assessment process a multiagency agreement should be reached
before families are informed of the diagnosis. This may be at the multiagency
meeting or through liaison with all the professional involved. In the event if a
disagreement then this should be resolved at the multiagency meeting or a referral
can be made to the Autism Reference Group.
Once the professionals involved in the assessment are satisfied that any
uncertainties have been resolved, and that Autism Spectrum Disorder is identified,
this should be confirmed in a face to face meeting with the parents/carers.
Information about available support and agencies should be given to the
parents/carers at this meeting. The identification of an ASD should then be
confirmed in writing to the parents/carers and all professionals
There should be a discussion with the family about how and when to share the
outcomes of the process with the child/young person, taking into account their age,
developmental level and parental wishes.
A care plan is prepared and implemented along with an education plan where
appropriate.
If the Educational Psychologist is involved then the Educational Psychologist should
make a referral to Autism Outreach Service (AOS) for County children or to Learning
and Autism Support Team (LAST) in the City. If there is no Educational Psychologist
involved then the coordinator should inform AOS/LAST as appropriate.
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ASD EXCLUDED
Once the professionals involved in the assessment are satisfied that any
uncertainties have been resolved, and that an Autism Spectrum Disorder is NOT
identified, then this should be confirmed in a face to face meeting with the
parents/carers. The strengths and difficulties of the child should be indicated and any
alternative diagnosis given. The information should be confirmed in writing to the
parents/carers and all professionals. Appropriate support should be suggested
where indicated.
ASD NOT EXCLUDED
Despite all the assessments it is sometimes not possible to come to a conclusion.
Where more time is required for assessment (such as for a child to develop, or for an
Intervention to be evaluated), then parents/carers should be informed verbally (and
in writing) of what the next steps are and when the circumstances will be reviewed.
Summary of key features of recommended schedules
Schedule IQ Range ASD Range Key Points
< 70 Childhood Autism &
Atypical Autism
Looks at current presentation
Useful in uncomplicated cases / limited
history
DISCO Whole
range
Whole spectrum Gold standard diagnostic history
Accredited users only
ADOS Whole
range
Whole spectrum Gold standard observation schedule
4 modules for differing communication
levels
Accredited users only
Source details
Diagnostic Interview for Social and Communication Disorders (DISCO): 11th
edition
Wing, L (2003). London: National Autistic Society.
Autism Diagnostic Observation Schedule (ADOS)
Lord, C, Rutter M, DiLavore, P, and Risi, S (1989). California: Western
Psychological Services.
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Assessment of Need
This process is holistic and should be undertaken by the appropriate members of
Health who have experience in working with people with ASD. This will include
Community Nurses, Occupational Therapists, Psychologists, Psychiatrists and
Paediatricians. The professional(s) undertaking this process should be those best
suited to the individual’s main areas of need, but this may also be dictated by the
service they are diagnosed in.
The assessment of need may highlight certain areas requiring specialist intervention
and support, for example ADHD or anxiety. Referrals should be made to the
appropriate organisations for these to be further assessed and managed, for
example anxiety managed in CAMHS.
Post diagnostic education opportunities vary at present between the pathways with
parental education supported in both CAMHS and CAMHS LD but unavailable in
CCHS.
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P
r
a
c
t
i
c
a
l
P
r
o
b
l
e
m
S
o
l
v
i
n
g
Intervention Process Overview
Tier 1
Tier 4B
Tier 2
Tier 3
Tier 4A
Tier 1explained Practical problem Solving explained
Tier 2 explained Professional roles explained- Tier2
Tier 3 explained Professional roles explained- Tier3
Tier 4A explained Professional roles explained – Tier4A
Tier 4B explained
Pra
ctical P
rob
lem
So
lvin
g
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Stepped Care Model Interventions on the Autism Pathway, in line with the other Clinical Pathways in LPT, follow the Stepped Care Model. A detailed description of what each professional group offers at each tier and the competencies necessary for this can be found in Appendix D.
Tier 1: Self Guided management and carer – supported
management
Children in this tier are either able manage their difficulties independently, or with
support from their carers. Local and national voluntary organisations are the main
sources of information and support at this level, for example providing general
information about ASD, signposting to resources, support groups for individuals and /
or family members and carers, social interest and activity groups, and information
about education and employment.
At this level on the Pathway, specialist healthcare services offer education and
training to professionals, carers and service users; and general advice and support
to professionals working with individuals with ASD.
Tier 1
Tier 2
Tier 3
Tier 4
Stepped Care Model: Levels of Need
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Practical Problem Solving
Common and less severe problems may be seen affecting a child who could have
features of an ASD, which it may be possible to resolve satisfactorily with fairly
simple short-term measures. Difficulties in social understanding, two way
communication, excessive rigidity in dealing with others or related behavioural
problems might be described or observed. Such problems can affect children at
home with the family, at school, or in leisure settings.
A first step towards attempts at solving the problem might, for example, involve the
carer/parent, reading or otherwise considering some general information about ASD
and considering whether that might help them to better understand the presenting
problem. The NAS has excellent descriptive material in the form of leaflets and on its
website.
A second step might involve addressing the problem in a direct, concrete, practical
and clearly communicated way that reduces demands and expectations of the
affected child. This might include reducing non-essential social contact time and
social expectations, help with organising, timetabling and having an uninterrupted
routine, practical support to help the person engage with a harmless and for them
enjoyable special interest, and using written (e.g. email or picture symbol) rather
than verbal, face to face or telephone communication.
Because a full assessment may take some time to be provided, a further step, or an
alternative step, could be to signpost the affected family to sources of support such
as local groups for parents/carers.
Tier 2: Management by generic services
At this level the primary sources of support are from the educational sector and
generic health services. Considerable support is available within the school and
college environment and they often have considerable training at managing many of
the problems experienced. There is additional support in education from Specialist
teaching services such as the Learning and Autism Support Team in the city and
Autism Outreach in the county to help schools provide the correct educational
approach. They also provide learning opportunities for families to develop further
understanding of ASD. Educational Psychologists are also available to provide
specialist advice within the educational setting around issues preventing a child from
accessing the curriculum, either due to academic or behavioural problems.
Generic health services such as General Practitioners, School nurses or health
visitors may also provide initial interventions around some of the core difficulties
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encountered in ASD; for example a GP may give advice on management strategies
for sleep difficulties. Social care can provide advice and help to those families who
are struggling to meet the needs of the children particularly if the children have a
significant learning disability.
Tier 3: Management by specialist services
The management by specialist services can follow a diagnostic assessment or as
part of a re-referral. The actual management depends on the problem and the
service which has accepted the referral.
The generic CAMHS team including psychiatrists, nurses, occupational therapist,
psychologists can provide assessment of co-morbid conditions both neuro-
developmental such as ADHD, or emotional disorders, for example anxiety.
Assessments for sensory problems or cognitive evaluations can be carried out as
part of the overall management and there is access to therapies including Cognitive
Behavioural Therapy or pharmacological interventions. In addition there is access to
groups for parents and adolescents for psycho-education.
In the Community Child Health Service help can be provided from a number of
different professionals including paediatricians, nurses, occupational therapists, and
speech and language therapists. Identification of problems in the younger age group
and co-existing physical problems such as coordination problems, sensory
processing and speech problems tends to be assessed by this service in addition to
managing co-morbid neurodevelopmental disorders.
The CAMHS LD Service provides a multidisciplinary approach, according to the
needs of the child. Key areas of input are in the management behavioural issues
including aggression and self-injury, anxiety and other psychiatric disorders, dietary
and sleep issues, sensory needs, and risk issues.
Tier 4: Complex, high-risk case-management by specialist services, in conjunction with other agencies
Tier 4a
This applies to individuals with high-risk behaviours who require more intensive
input. Within the LD Service management is primarily by the LD Team on an
intensive basis, in the community or in school settings. Multiple agencies are often
involved due to the complexity of need and risks involved.
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For those without a learning disability who develop a significant mental health
problem which requires intensive assessment or treatment due to the risk to the child
or others, an admission to the generic inpatient unit, Oakham House is possible.
Although this is not ASD specific it can provide the appropriate setting for the
management of certain problems.
Tier 4b
This applies to those individuals with levels of challenging behaviour / risks that
cannot be managed within local services. Such individuals are currently placed in
out-of-area services.
Note: Individuals are likely to move up and, hopefully, down the tiers over time,
depending on their level of needs. They may also be on several tiers
simultaneously; depending on the range of needs present at any given time.
Mapping skills to standards
Given the high prevalence of ASD, it is vital that all staff working in public services
develop a basic understanding of ASD and its likely impact on the person’s
functioning; for professionals working more directly with people with ASD, the
necessary skillset is clearly more advanced. Recent guidelines have provided
recommendations for this, which we have used to underpin development of a ‘Skills
grid’ (Below). The grid is a constantly changing and expanding piece of work, so
suggestions for its development are welcomed.
S.No Guideline
Recommendation
(NICE , SIGN)
Staff involved Staff skills
required
Training
available/
required
1. Basic
understanding of
autism, its impact
on social,
educational and
occupational
functioning and the
impact of
environment on
autism
Primary and
secondary care
staff, Social care
services
Probation and
Criminal Justice
services
Education and
support services
Generic – Ability to
consider the
presence of
autism, its
complexity and
diverse
presentation and
ability to refer
cases that need
further specialist
diagnostic
assessment / input
Basic Awareness
Training available
from CAMHS
Training materials
available from the
Autism Education
Trust
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2. Work in
partnership with
families of children
with ASD, taking
time to develop a
trusting
relationship
Primary and
secondary care
staff, Social care
services.
Educational staff
Generic- Allowing
adequate time,
using appropriate
communication
strategies and
ensuring that
environment is
autism friendly
Training available
in the educational
sector. Limited
training in health
sector
3. Ensure that
comprehensive
information on
local and national
services for,
support and
information is
available in an
appropriate
language or format
(visual, verbal and
aural, easy read,
colour and font
formats)
Secondary care
staff, Social care
services
Educational staff
All staff to be
aware of the range
services available
Limited access
through health
settings.
Information
available from
local voluntary
groups and
education
4. Staff specifically
dealing with autism
need to have a
greater
understanding of
autism and its
impact on
functioning and
associated co-
morbidities
Secondary care
staff,
Educational staff
Skills to
understand
problems caused
directly by autism
and ability to
differentiate this
from problems
arising due to co
morbid conditions
Skills to
understand,
assess and
manage
communication
difficulties and
sensory issues
Specific training
unavailable in
health
Likely GAP IN
PROVISION at
present which will
need addressing.
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5. Comprehensive
assessment using
structured
diagnostic tools,
consider
differentials,
assess risk.
Psychiatrists
Psychologists
SALT
OT
Nurse
Specialist- Ability
to take a detailed
developmental
history , observe
the individual in
relation to the
profile of problems
that people with
ASD experience
and ability to
formulate and
arrive at a
diagnosis
Formal training in
DISCO & ADOS
underpins this role.
6. Develop risk
management plan,
develop crisis
management plan
Psychiatry,
Psychology,
nursing CAMHS
OT,LD team play a
role in risk and
crisis management
but are guided by
trained staff who
diagnose ASD
Enhanced /
Specialist
depending on
complexity and risk
level.
Profession-specific
training, and
clinical experience.
7. Develop an
individualized care
plan that is
accessible to the
person/ family
Psychiatrists
paediatricians
Psychologists
Community Nurses
SALT, OT
Enhanced-
Ability to put in an
individualized care
plan in an
accessible format
Dependent on
clinical experience.
Training probably
required.
8. Consider
Functional analysis
if there is
challenging
behaviour
Recognition-
Primary Care,
Psychiatrists,
Psychologists,
Community Nurses
Provision-
CAMHS LD
service
Generic-
Recognition of
presence of CB
and need for
further
assessment.
Specialist-Training
in Functional
Analysis
Specialist Services
already providing
such interventions
GAP IN SERVICE
identified in
generic CAMHS or
CCHS for able
children with ASD
and behavioural
issues without
associated MH
difficulties.
Page 21 of 31
9. Interventions to
improve social
interaction
Psychologists
Psychiatrists
Paediatricians
Community Nurses
LD autism
SALT, Outreach
Education
Enhanced -
Training in
Functional
analysis, social
stories, social skills
training and
mentoring
Limited availability
in many services.
Educational
services provide
most of this
intervention.
Limited availability
in health services
10. Interventions to
develop skills for
daily living
OT
Education
OT training
Education training
Often provided in
educational
settings.
11. Interventions to
develop anti-
victimisation skills
Probation, Police,
Primary and
Secondary Care,
Social Care,
Safeguarding
teams
Enhanced-
Awareness of ASD
specific
vulnerability
issues,
Safeguarding
training
Liaison between
probation and
health services is
important
Current training
packages to be
reviewed to ensure
vulnerability issues
covered.
12. Interventions to
develop anger
management skills
CN
Psychology
CAMHS LD
Enhanced -
Tailoring of
programs to needs
of the individual
with ASD
GAP IN SERVICE
in CCHS. Limited
availability in
CAMHS
13. For children with
autism and
coexisting mental
health disorders,
offer a range of
psychosocial
interventions
informed by
existing NICE
guidance for the
specific condition.
Secondary care
staff
Specialist-
Allow equal access
to different
modalities of
psychotherapy
through
reasonable
adjustments
Generic CAMHS
and CAMHS LD
Services to provide
Page 22 of 31
14. Interventions for
families and carers
Secondary care
staff & social care
Generic -
Signposting,
information
provision,
knowledge of
support groups
Specialist -
Psycho-education
available for
parents in CAMH
services
Training provided
in house.
Discharge from the Pathway
Discharge from the Pathway can occur at any stage of the process; however
common points are as follows:
Screening stage: screen negative for ASD.
The professional who has undertaken the screening process may consider
another condition responsible for the presentation or there is inadequate
evidence of symptoms of ASD
Diagnostic stage: case confirmed as not ASD.
Specialist Healthcare Services may discharge back to Primary Care if there
are no other issues, or refer on to other Pathways or Services according to
the issues highlighted during the assessment process.
Assessment of need stage: needs being met.
If assessment shows that the person’s needs are already being met, then
Specialist Healthcare Services will discharge the person back to Primary Care
at this point.
Intervention stage: Specialist Healthcare interventions completed.
For example, following assessment of CB, development of behavioural
management guidelines and support for carers with their implementation, the
person is then discharged back to GP care.
Go back to Pathway
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Page 23 of 31
Professional Roles
Having established the key skills required for working with people with ASD, it is then
important to clearly delineate their roles and responsibilities. This section of the
Pathway document sets out the roles expected of child health and social care
professionals; other organisations will clearly have their own criteria, or should be
encouraged to develop them.
TIER 2
S.No Professional
Group
Roles
A. Psychiatry Education and support: General advice on ASD
assessment and management to other Healthcare
Services including Primary Care Services, and to partner
agencies
B. Paediatrics Education and support: General advice on ASD
assessment and management to other Healthcare
Services including Primary Care Services, and to partner
agencies
B. Psychology Education and support: Providing more specific/service
user specific advice and support for other professionals
C. Health
Visitor\School
nurse
Intervention: Advice on basic health related matters
including diet and sleep. Some behavioural advice
provided.
Education and support: Basic awareness training for
carers/family and other professionals
D. Speech and
Language
Therapy
Intervention: Supporting families and schools with
consultation and therapy on communication related
problems.
E. LD outreach Intervention: Intervention to enhance and enable the
development of capability and capacity of services and
other professionals working with people with ASD.
F. Occupational
therapy
Assessment: Brief baseline assessment, environmental
assessment sensory processing and coordination.
Intervention: Sensory Diet, functional activity related.
Education and training: General information / training
regarding Sensory Integration and Sensory Modulation.
Page 24 of 31
G. LD Autism service Education and support: LD-related autism training in
conjunction with health and social care colleagues.
Signposting to LPT Asperger’s training where appropriate
H. Social care Education and Support / Assessment: Single Point of
Access – for new referrals: information giving and
screening for assessment.
Assessment: Education & Disabled Children’s Team –
Education Statement triggers identification at year 9
under the Disabled Persons Act 1986 for assessment
during the last year at school for services over the
transition into adult services.
TIER 3 – Role of professionals
S.No Professional group
Roles
A. Paediatrics Assessment: Diagnostic assessment of ASD/traits,
associated problems e.g. sleep difficulties, associated
developmental (e.g. ADHD),behavioural conditions and
epilepsy (mainly in younger age group)
Intervention: Management of behavioural issues and
physical issues
Prescription and monitoring of certain psychotropic
medication.
Education and training: Provision of information /
signposting, advice and support for the person and their
carers.
A. Psychiatry Assessment: Diagnostic assessment of ASD/traits,
associated problems e.g. sleep difficulties, associated
developmental (e.g. ADHD), psychiatric and behavioural
conditions.
Intervention: Management of mental health and
behavioural issues
prescription and monitoring of psychotropic medication.
Education and training: Provision of information /
signposting, advice and support for the person and their
carers.
Go back to intervention
Page 25 of 31
B. Psychology Assessment: Initial assessment in teams
Assessment of key psychological difficulties in ASD
Neuropsychological assessment to inform diagnosis and
profile further needs and post-diagnostic support.
Intervention: are based on the formulation. They may
address core features of the ASD e.g. impaired social
relationships / poor social communication, or related
difficulties e.g. depression, anxiety, social phobia, anger,
poor self-esteem and forensic issues.
Psychotherapeutic approaches include CBT and
behavioural approaches;
Post-assessment follow-up support and intervention:
anxiety management.
Education and support: Interventions may be directly
with the child or with the system supporting that child.
Supervision and support can be provided for other
members of the teams to work with the mental health
needs of those with ASD, for example to carry out single
approach psychotherapies such as skills-based CBT;
behavioural interventions; psycho-education.
C. Nursing Assessment: Initial assessment in teams and
assessment of co-morbid conditions
Intervention: Support the individual to understand their
condition. Provide modified CBT. Prescribe certain
treatments for example ADHD treatments. Behavioural
analysis with CAMHS LD. Assessments of sleep
Education and training: Provide advice to other
professionals e.g. in mental health services and support
them to develop guidelines to care for individuals with
ASD, then support the formulation and further skill
development.
D. Speech and
Language therapy
Assessment: Communication; eating and drinking
difficulties,
Intervention: Development / support with introducing
communication systems/guidelines; development /
support with introducing eating and drinking plan
Education and training: Training for staff / carers where
appropriate
Page 26 of 31
E.
Occupational
therapy
Assessment: ADL (personal, productive and
independence); sensory assessment (each modality);
MOHOST (model of human occupation screening tool);
environmental assessment; AMPs (assessment of
process and motor skills), activity analysis / meaningful
activities, interest checklist; consider future
planning/accommodation needs. (Depends on service OT
is based in)
Intervention: Practical input: modelling, providing
guidelines to problem solve / promote skills and graded
tasks, goal setting, provision of objects of
references/visual timetables, anxiety management,
relaxation techniques, anger management.
Education and training: Training for staff / carers where
appropriate
TIER 4 Role of professionals
S.No Professional
Group
Roles
A. Psychiatry Assessment and Intervention:
Inpatient unit: involved in the assessment process and
coordinates management
CAMHS LD: assessment and management of complex
cases
Key links: MDT approach to assessment of needs;
liaison and referral to partner agencies
B. Psychology Assessment: as for level 3, but more detailed
assessment (utilising various psychometric and
standardised assessments) and formulation when
complexity or risks associated with service user are high.
Intervention: intensive or longer-term therapeutic work,
often from a multi-therapeutic stance (integrative or
eclectic) due to the complexity of the case and
level/nature of risks. Close multidisciplinary working
undertaken.
Education and support: direct support and training for
staff teams working with the individual.
Go back to intervention
Page 27 of 31
C. Community
Nursing
Assessment: Lead or contribute to a robust risk
assessment, often acting as CPA coordinator.
Intervention: Intensive direct support could be required
on a daily basis. Work within the MDT to continue to
refine the proactive, active and reactive guidelines.
Liaise with other agencies ie social services, police,
probation, housing etc. Facilitate others in delivering
longer term support packages using psychological and
behavioural approaches.
Education and training: (In CAMHS LD) Provision of
more advanced training for other members of the MDT
and external partners.
Information for Patients/ Carers
Autism is a lifelong developmental disability that affects how a person communicates
with, and relates to, other people and the world around them.
It is a spectrum condition, which means that, while all people with autism share
certain areas of difficulty, their condition will affect them in different ways. Asperger
syndrome is a form of autism.
More information on the diagnosis, management and useful resources can be found
on http://www.autism.org.uk/
Go back to intervention
Go back to Pathway
Page 28 of 31
Useful Contact Details
Specialist Healthcare Services CAMHS Outpatient Teams Contact City Team:Westcotes House, Westcotes Drive Leicester, LE3 0QU.
Tel 0116 295 2900
County Teams: Valentine Centre, Anstey Lane Glenfield, Leicester LE7 7GX. Tel 0116 295 2992
Young Persons Team: Westcotes House, Westcotes Drive Leicester LE3 0QU
Community Childrens Health Service Contact: Bridge Park Plaza, Thurmaston, Leicester LE48PQ Tel 0116 225 2525 CAMHS Learning Disability Service Contact: Rothsay, London Road, Leicester LE22PL Telephone: 0116 225 5274 Fax: 0116 225 5272
Social Care Services
Leicester City: Child Social Care Service and Learning Disabilities Service Contact: 1 Grey Friars, Leicester, LE1 5PH. Telephone: 0116 252 7004 Email: [email protected] Leicestershire and Rutland Leicestershire County Council Contact: County Hall, Glenfield Road, Leicester LE38RA Telephone 0116 232 3232 Website: www.leics.gov.uk Rutland County Council Contact: Catmose, Oakham, Rutland LE15 6HP Telephone 01577 722577 Email [email protected]
Page 29 of 31
Education Services Leicestershire County Council Contact: Educational Psychology Service
Autism Outreach Team Based at County Hall Glenfield Road, Leicester LE3 8RA Leicester City Council Contact: The Learning and Autism Support Team, New Parks House, Pindar
Road, Leicester, 0116 225 4800 The Psychology Service, Collegiate House, College Street, Leicester,
LE2 0JX Tel 0116 221 1200
Email [email protected]
National Support Services National Autistic Society Contact: The National Autistic Society, 393 City Road, London, EC1V 1NG. Telephone: 020 7833 2299 Fax: 020 7833 9666 Email: [email protected] Website: www.autism.org.uk
Local Support Services Leicester Asperger Syndrome Support Group Contact: Shelagh Wilson Telephone: 0116 270 1074 Email: [email protected] Website: www.aspergerleics.org Loughborough ASD Support Group Contact: Carole Heubeck Telephone: 01530 244790 Email: [email protected]
Page 30 of 31
Market Harborough Spectrum Support Group Telephone: 07831349574 Group email: [email protected] Melton and District Autism Support Group Contact: Lesley Brown Telephone: 01664 565155 Rutland and Melton SIBS Support Group Contact: Dorothy Spence Telephone: 01572 756747 SPACE Castle Donington Support Group Contact: Sara Goodwin Telephone: 01530 461660 NAS Leicester Contact: NAS Leicestershire Service, Grovebrook House, Brook Street,
Whetstone, Leicester, LE8 6LA. Telephone: 0116 286 6956 Fax number: 0116 275 2217 Email: [email protected] Website: www.autism.org.uk/leicestershire Leicestershire Autistic Society Contact: Lindy Hardcastle Telephone: 0116 291 6958 Email: [email protected]
Go back to Pathway
Page 31 of 31
Contributors and Acknowledgements
Acknowledgements Thanks go to all who have contributed to the development of this Pathway. Firstly, thanks to all the members of the Pathway Group for their time, effort and enthusiasm. Thanks also to Dr Sabyasachi Bhaumik, Consultant Psychiatrist LD and previous Medical Director LPT, for his support, guidance and commitment to developing this and other Care Pathways within LPT. Thanks to Ms Katie Sharman, Medical Secretary, for coordinating information and secretarial support with Pathway Group meetings.
